Praise for A Full Life with Autism

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.



A Full Life with Autism: Comments by Dr. Cathy Pratt

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.


Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Back to School 101 : How parents of ASD teens can get prepared for the school year

Here’s a column I wrote for the and still useful for this new school year!

Aug 27   Holy Moly – can you believe the summer break is just about over??  In last week’s column, Back to School : How to prepare your teen, tips for preparing your teen on the spectrum for the new school year were discussed. In this column, some ideas on  how parents can best be prepared for the new school year  are covered.  These tips are from both the “Back to School Guide” put together by A2Z Educational Advocates based in Pacific Palisades, and from my book “Adolescents on the Autism Spectrum.”

  • Perhaps it seems obvious, but contact your school if you have not been informed of your teen’s  schedule or the name of the teacher(s), classroom(s), bell schedule, district and master schedule for the new school year. Sometimes, these are not known till the last minute and the school administrators are dealing with many issues – budget cuts, union and staffing concerns, etc. But, by asking politely and reminding them that you need to ‘prime’ your teen about where he needs to be, who he will see, what the schedule is for the first day of school, you can reasonably hope to get an answer.
  • Review your teen’s  IEP document to refresh your memory about what the goals are. If you have any questions as to how the IEP will be implemented, get a list going to communicate your questions to the person responsible.
  • If your teen is to receive aide support as stipulated by the IEP, it would be a good idea to contact the administrator to insure that an aide has been assigned. If specific training has been specified in the IEP,   ask  if the aide has been trained or when the training will take place.
  • If your teen receives related services at school such as occupational therapy and/ or speech therapy, make sure you are aware of when and where he is receiving the services and that it is in line with the IEP. If the services are provided outside of the school day, contact the non-public agency providing the service to ensure an appropriate time is scheduled for your teen.
  • This is a good time to ensure any records regarding your son and his educational needs are in order. Filing everything (IEPs, assessments, correspondence) in one 3-ring binder in chronological order is most helpful as it provides easy access when you need to find a particular document.
  • If your child is fully included, or has a new special education or resource teacher, it is helpful to provide the teacher with a one-page positive overview about your teen, and ensure that the teacher is aware of the IEP goals and objectives. Your teen may wish to write his own note to the teacher.
  • Self –advocacy is a skill that should be developed in every teenager. When situations come up in regards to information that needs to be shared with the teacher and classmates, or situations arise that need to be resolved, think of ways   your teen take part in that process, and bit by bit, to take more ownership of it, depending upon his/her ability level.

In my next column, some strategies to help general education teachers who have students on the spectrum included in their class will be shared.

It Takes An Army

Graduating high school was not one of the goals I had for Jeremy. Now he’s college bound.

In 2007, my son Jeremy walked the graduation ceremony at the local high school along with the other seniors from his severely handicapped class. On June 18, he will be walking the graduation ceremony again, in the same gold and scarlet robe he wore three years ago. This time however, he will have earned and will receive a full academic diploma. He has a GPA of 3.5. For me, this is unbelievable. Graduating high school was not one of the goals I had for Jeremy. The goals I had were mostly those based on functional living skills.

When Jeremy was diagnosed, I was told to find a good institution for him. I don’t think the medical professional who diagnosed him meant “college,” but that is where he is headed. People ask me how Jeremy made it to this point, and the truth is, there is no short answer. Like most parents, I started out hoping to find that “one thing” that was going to make a huge difference in Jeremy’s life, that would improve his chances of overcoming the challenges he faced. But I soon realized that there is no magic bullet.

Jeremy, now 21, has received numerous treatments, therapies, and educational strategies (some of which he still continues) with acronyms such as ABA, TEACCH, OT, SI, AIT, VT, RPM, and some biomedical interventions including methyl B12, HBOT and more. All of them have helped somewhat, some more than others. But the most important ingredient to Jeremy’s success has been the same that it is for all of us: having the right people as teachers and mentors – people who believe in you, who motivate you to do your best. People who see beyond the label and who are willing to see the person. People who are willing to try different ways of reaching and connecting with the student, when the traditional ones do not appear to be working.

Any tasks requiring motor planning and sensory processing have always been extremely difficult for Jeremy. My office is full of binders that include Jeremy’s task analysis and data sheets for all kinds of skill acquisition such as fastening pants and brushing teeth. When he was younger, many educators and other professionals took Jeremy’s inability to respond as a lack of intelligence, rather than as challenges due to visual processing issues and difficulties in initiating and controlling his motor planning. Teaching methods based on visual strategies did not work with Jeremy. He is not a visual learner, and his visual processing was not working correctly, but no one recognized that at the time.

When he started high school, Jeremy attended a class for the severely handicapped at the local school. When Jeremy’s teacher, Rachel Page, came to our house for a home visit and saw how I was teaching Jeremy to point to letters to spell words. Jeremy had been taught by Soma Mukhopadhyay twice a month, over a period of 14 months, using the Rapid Prompting Method she had developed, and I continued to work with Jeremy using this method of teaching. Rachel tried what she had observed at school and was successful. By then, I had had enough battles with the powers that be to even consider asking them to use an unknown method to try and teach Jeremy. (The year before, Jeremy had come home from the middle school with rug burns on his chest and back inflicted unknowingly by an inexperienced occupational therapist, and had ended up filing for due process when the school district refused to provide training. At the IEP meeting I had requested, the OT said she didn’t need anymore training. No comment.) I had decided to do what I did at home and to just focus on Jeremy having a safe environment at school and coming home unmarked.

Rachel then invited me to the classroom to show her and Jeremy’s paraprofessionals how I was teaching Jeremy at home. At an IEP meeting, it was decided by the IEP team to allow Jeremy to attend one general education class on a trial basis. This was a major victory for Jeremy at this school district at that time.
Jeremy’s most important growth period came over the next three years, thanks to Allan Gustafson. Allan was Jeremy’s second teacher in the SH classroom and is the best teacher that Jeremy has ever had. He helped Jeremy—and all his students—grow not only intellectually, but emotionally as well. To give you an idea of the type of teacher Allan is, read Allan’s assessment of Jeremy for an Individualized Transition Plan (ITP) meeting in 2006. It says it all about the type of person he is:

“Jeremy is a complicated young man who people cannot judge on appearance. A good metaphor would be to describe Jeremy like as an artichoke. Each leaf on the artichoke has to be taken separately, each having its own characteristics. As you go through each layer of the leaves, it becomes more apparent that there might be something inside, something worth getting to. It takes time to get there, but there is a heart inside, worth the time and effort to expose, as some people say is the prize for the patience of delving through the layers of leaves. Jeremy is this man.”

In June 2007, Jeremy was technically a senior and it was time for him to attend the off-site transition program, thus his participation in the high school graduation ceremony. By that time, Jeremy had made it clear that he enjoyed learning, and wanted to continue learning even if he was no longer on a high school campus. Some of his IEP goals by then included preparing him for taking the GED sometime down the line while attending community college. It was clear that he was capable of doing that, although I would never have though that possible a few years earlier.

However, Jeremy did not handle the transfer out of high school into the transition program well at all. Meanwhile, my father was dying from lung cancer and I was traveling a lot to helping him and my mom, who lived two hours away. I wasn’t able to work towards changing the situation. Bruce Cochrane, an administrator new to the school district (now head of Pupil Services), became concerned about the complete change in Jeremy, from a model special education student to a non-compliant, unhappy and disruptive person. Bruce started asking questions, studying Jeremy’s school records, interviewing teachers, observing Jeremy. Jeremy, still considered a transition student, was moved back to the high school where his behavior improved. He continued on a couple of workability projects, but started taking general education classes again.

Then, at an IEP meeting, Bruce brought up the question – was Jeremy interested in working towards obtaining his diploma? According to Jeremy’s official transcripts, Jeremy needed more credits in certain subject areas, and he needed to pass the California High School Exit Exam, which is routinely given to tenth grade students. Students are allowed six chances to pass this test. The IEP team recommended that the test be given to Jeremy the first time as a baseline, if he was interested in trying to get his diploma. Jeremy surprised us all by passing on his first attempt all the parts of the test he was given. However, for some reason, the school did not administer the essay part of the test, and Jeremy had to retake the complete English section of the test a few months later. Again he passed. Since then, he has steadily been taking two classes a semester towards his diploma.

This June, I am doubly blessed. Not only is Jeremy graduating from Torrey Pines High School, his sister, Rebecca, is graduating from the other high school in our area, Canyon Crest Academy. I am proud of both of them, and thankful for the educators that have crossed their paths, not to mention the army of paraprofessionals, therapists, support staff and other professionals who have joined us on our journey. Clearly, there is not one magic bullet. Rather, it takes an army, and we will never forget them.

This article was first published in Spectrum Magazine, June/July 2010 issue.

Back to School 101: Tips for general education teachers

Tips for general education teachers

Back in August, I wrote this post for my Autism and Adolescence column in the, and I’m re-posting it here because I’ve received a few emails with questions recently from general education teachers. Maybe there are others who could use these little nuggets of information.

Often junior high and high school teachers have teenagers with Asperger’s Syndrome included in their classrooms, and are not given much in the way of useful information. This column will provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.  For more information, check out this webpage.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant.  A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

  • It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to stay focused. Continue reading »

Then and Now: Reflections on Raising a Son with Autism

My first contact with autism – 30 years ago – was at Fairview State Hospital in Orange County, California. I worked there two years, preparing young adults for de-institutionalization, teaching them self-help and community living skills using behavioral methods. I learned about discrete trials, prompting, rewarding and taking data. Little did I know years later I would be using these same techniques to teach my own son, Jeremy.

To this day I vividly remember my first contact with a young adult with autism. It was my first day at work, and I was waiting in the recreation therapy office for my boss. Gregg walked in. “Hi my name is Gregg Doe. I used to be a sports newscaster. Do you like baseball? Ask me about any World Series and I can tell you who won and what the score was.” I was thinking how dedicated this man was to leave a job in television to work at a state hospital, until I looked at my clipboard and saw his name included in the list of people I was supposed to teach. Gregg could tell you all about sports, but couldn’t tie his own shoelaces.

Fast forward to today: I know a lot more about autism, and so does the general public. Then, I would take Gregg and his peers into the community to practice crossing the street or ordering food in a restaurant, people would stare and avoid getting too close. Now, when my son – who at 20 is about the same age as most of my Fairview patients back then – is out in public, people are more accepting, even when Jeremy is not on his best behavior. People smile at us, some stop to talk and ask questions when he has his assistance dog with him. People’s attitudes towards autism – and people with autism – have changed, in a good way. Services for kids have improved. Teachers are more knowledgeable about autism.

What has not changed over the years, however, is the devastation a parent feels when hearing the diagnosis of autism for the first time. Difficult then; just as difficult now. No matter how deeply inside you realize something is wrong, suspect it might be autism, the professional pronouncement still kicks you in the stomach and sends your head reeling. Today there are many different treatments and therapies, a good thing. However, there is still no know way of knowing which therapy or biomedical treatment will be helpful to your child. Then and now: we grieve, we live amidst uncertainty, we lie awake night after night searching for answers.

When Jeremy was born in Paris in 1989, autism was still fairly rare: The estimated diagnosis rate was 1 in 10,000. It’s still painful to think back to Jeremy’s early years. It was almost impossible to get any help for him at the time. I knew he was not developing normally, and I wanted to know why. I wanted somebody to tell me what to do to help him. Most of the medical professionals  I consulted told me to take him to see a psychoanalyst – This was the treatment of choice in Paris at the time. When Jeremy finally was diagnosed, at age three, the specialist handed me a box of pencils and said, “If you are lucky, you will find a good institution for your son. He will eventually learn to package pencils into a box. That’s where these came from.” That was then. This is now: I have found an institution for my son: it’s called “college.” Jeremy is headed there after he graduates from high school in June 2010 – with a full academic diploma. He passed the California High School Exit Exam (one of the requirements), without modifications, only accommodations. He now needs to take and pass one year of algebra and one semester of science to earn his diploma.

My son’s success is not a miracle, rather the result of years of blood, sweat and tears (on his part and mine), and the hard work of many educators, home tutors, Jeremy and myself. I’m not especially talented, but I am very stubborn. I never asked the school for anything I had not first tried with Jeremy myself, experienced success and results, and had the data to prove it.

When Jeremy was 14, I took him to see Soma Mukhopadhyay, now Educational Director of HALO (Helping Autism through Learning and Outreach). I met Soma while doing research for my first book, Autism Spectrum Disorders. It was then I realized Jeremy was an auditory learner. All the years of using visual strategies, myself and educators thinking he was not “getting it,” finally made sense. Fifteen years ago visual strategies were the new kid on the block. Today a huge assumption exists in our community that all or the majority of students with autism are visual learners. It is simply not true. How many kids who “don’t get it” with visual strategies are really auditory learners, making marginal success because we’re not teaching to their learning style?

Soma started to teach Jeremy using the Rapid Prompting Method. It involved a lot of work, but slowly he began to make progress. That year I also realized how much he was “stuck” in his body. He could spell out and describe the steps needed to complete a sequence, but he could not move his body to do it without physical prompting.

Jeremy’s challenges (see sidebar) were, more often than not, a result of sensory processing issues and movement disorder. When I interviewed adults on the spectrum for my third book Autism Life Skills, I asked each what was important to them growing up. It surprised me to learn the great impact sensory processing challenges had, even on those with Asperger’s Syndrome.

My views about autism and autism treatments have changed over the years. Then, I was a die-hard behaviorist; I only used treatments scientifically proven to be effective. Now, I embrace different types of therapy as adjuncts to using behavior-based strategies (shaping, prompting, rewards, etc.). After witnessing Jeremy’s success with RPM and pointing to letters, having it validated in different ways by different educators, I believe parents should try a therapy or educational strategy that makes sense for the child and family. See if it works; there are ways of validating on an individual level.

While working with young adults at Fairview State Hospital before I had Jeremy, and even while he was little, my face scrunched up in disbelief when nonverbal people severely impacted by autism were described as “locked up” in their body, with no way of reaching us. Now I know exactly what they mean; this is Jeremy. I strongly believe there are different types of autism. I believe that for some, like my son, autism is a movement disorder. They cannot always control their movements or use their muscles (needed for speech and other important skills). Many, like my son, have problems initiating and stopping movement yet are capable of learning nonetheless.

Then and now, autism remains a multi-layered condition with no clear answers to guide parents and professionals. Then, treatment options were limited…so very limited. Now, options range from behavioral to biomedical, from sensory to social skills, and everything in between. Then, parents were told to expect the worst, to institutionalize their child, move on with the lives. Now, thankfully, we hold a brighter vision for our children’s future. Then and now: our children are gifts in our lives and our love endures. That will never change.


By Jeremy Sicile-Kira

Jeremy tells us…

When I was little, I had no real way of knowing what was going on around me. My body would not move even when I tried. Life was just chaos with light and sound but with no meaning. Then a physical therapist helped me learn to use my body. My mom helped me make sense of what I was seeing and hearing. I had tutors my mom hired that taught me with ABA. Then I had hearing therapy and lenses to help me see. It took a lot of effort on my part and the tutors to help me learn. Then my mom found Soma and RPM. This changed my life. I did not believe I could be so kindly taught by such a tiny woman. It is still lots of work and it is still difficult when I meet new people.

Having a way to communicate only makes life livable, but I need some nice relationships, which are not easy when you are like me. I plan to continue to learn, and to tell people to never give up.

[V1] Please add date.

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

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 ( at 10:30
a.m. Tuesdays. Every second Tuesday of the month, she hosts a program in French at 11

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

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

“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. News Metro — Adapting to autism