Click here to view an interview of Chantal in regards to her book on Fox TV in San Diego in March 2012.
Click here to view an interview of Chantal in regards to her book on Fox TV in San Diego in March 2012.
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.
Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Advocate Magazine, Age of Autism, Articles, Autism File Magazine, Autism Life Skills, Autism Speaks Website, Autism-Asperger's Digest Magazine, Autism: The Musical, Book Review: A Full Life with Autism, Chantal in the Press, Communication, Educators, Employment, Grandparents, Huffington Post, Jeremy Sicile-Kira, Love and Relationships, Parents of Children with Autism, People with Asperger's Syndrome, PsychologyToday.com, Resources For, Siblings of a Child with Autism, Transitions
Tags: 41 Things To Know About Autism, : asperger's syndrome, adolescence, adult, asperger's, Autism, Autism Society of America, Communication, Educators, Employment, family, graduation, high school, Jeremy Sicile-Kira, Lars Perner, life skills, love, parents, persons with autism, Rapid Prompting Method, relationships, RPM, sensory processing, teenagers, teens with autism, Temple Grandin, transition planning, Transitions | 1 Comment »
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.
Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Advocate Magazine, Age of Autism, Articles, Autism File Magazine, Autism Life Skills, Autism-Asperger's Digest Magazine, Autism: The Musical, Book Review: A Full Life with Autism, Chantal in the Press, Communication, Educators, Employment, Family Therapy Magazine, Grandparents, Huffington Post, Jeremy Sicile-Kira, Love and Relationships, Parents of Children with Autism, People with Asperger's Syndrome, Resources For, Siblings of a Child with Autism, Transitions
Tags: 41 Things To Know About Autism, : asperger's syndrome, adolescence, adult, Autism: The Musical, Communication, Educators, Elaine Hall, Employment, family, girlfriend, graduation, high school, Jeremy Sicile-Kira, life skills, Now I See The Moon, parents, Rapid Prompting Method, relationships, Seven Keys to Unlock Autism, teens with autism, Temple Grandin, Transitions | No Comments »
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
Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Advocate Magazine, Age of Autism, Articles, Autism File Magazine, Autism Life Skills, Autism Speaks Website, Autism-Asperger's Digest Magazine, Book Review: A Full Life with Autism, Chantal in the Press, Communication, Educators, Employment, Examiner.com, Family Therapy Magazine, Grandparents, Huffington Post, Jeremy Sicile-Kira, Love and Relationships, Parents of Children with Autism, People with Asperger's Syndrome, Resources For, Siblings of a Child with Autism, Transitions, Uncategorized
Tags: 41 Things To Know About Autism, : asperger's syndrome, adolescence, adult, asperger's, Autism, Autism Society of America, Communication, Dr. Cathy Pratt, Educators, Employment, family, graduation, high school, Jeremy Sicile-Kira, life skills, love, parents, Rapid Prompting Method, relationships, RPM, sensory processing, teenagers, teens with autism, Temple Grandin, transition planning, Transitions | 1 Comment »
This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.
It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.
Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of. Jeremy states: “I have oftentimes been the victim of ignorance.” We must not be party to what Jeremy has suffered. We need to be humble and helpful, persistently curious and ever respectful. We cannot presume to know what we do not. We must take the time to get to know the hopes and dreams of people whom we do not yet understand.
I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships. How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving. To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going - what is working, what isn’t, and what to do to try next to understand the situation better and try something different.
In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.
Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders
Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Advocate Magazine, Articles, Autism Life Skills, Book Review: A Full Life with Autism, Chantal in the Press, Communication, Educators, Employment, Grandparents, Jeremy Sicile-Kira, Love and Relationships, Parents of Children with Autism, People with Asperger's Syndrome, Resources For, Siblings of a Child with Autism, Transitions
Tags: 41 Things To Know About Autism, : asperger's syndrome, adolescence, adolescents, asperger's, Autism, Chantal Sicile-Kira, Communication, Dr. Joshua Feder, Educators, Employment, Jeremy Sicile-Kira, josh feder, life skills, Rapid Prompting Method, relationships, special education services, teens, Temple Grandin, Transitions | No Comments »
A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence is my latest book co-authored with my son Jeremy (foreword by Temple Grandin) that was published on March 27 by Macmillan. The book has received many excellent reviews. Here is one by Kirkus Book Reviews, whose reviewers are known as the world’s toughest book critics:
For readers already knowledgeable about autism and Asperger’s syndrome, a hands-on approach to transitioning into adulthood.
Sicile-Kira (41 Things to Know about Autism, 2010, etc.) and her autistic son, Jeremy, join forces in this guidebook to help parents and their autistic offspring move beyond childhood and evolve into an adult life. Although special-education services exist for children with autism spectrum disorder, once a child reaches adulthood the lack of adult services becomes apparent. As the mother of a severely autistic child, the author understands the needs of caregivers and children on the spectrum alike to shift to a quality of life that provides independence for all parties. “To create the future that you and your adult child envision will take perseverance and work,” she writes. “But good quality of life and peace of mind is worth it.” Based on her research, Sicile-Kira has compiled the majority of available resources into an accessible handbook that provides information on topics such as romantic and sexual relationships, finding appropriate living arrangements for true self-sufficiency and acquiring and keeping a job. The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and “top ten tips for parents,” written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum.
A proactive method for raising an adult child with special needs.
-Kirkus Book Review
Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Autism Life Skills, Book Review: A Full Life with Autism, Communication, Educators, Employment, Jeremy Sicile-Kira, Love and Relationships, Parents of Children with Autism, Transitions
Tags: A Full Life with Autism, adolescence, adults with autism, Chantal Sicile-Kira, Jeremy Sicile-Kira, Kirkus Book Review, Kirkus Reviews, relationships, special education services, Temple Grandin, Transitions | 1 Comment »
“ I am frankly not acting nicely to new support staff.”
When it comes to autism, some things get easier and some things get harder as they get older. Neurotypicals at 23 can be ornery, and so can 23 year olds on the spectrum. Some things don’t change.
Although the transition to the teen years can be difficult; the transition to adulthood can be even more challenging. It’s a balance between giving them the freedom to make their own decisions, and providing the familiarity of structure they seem to need. Some days can be tough. On those days, I think of the British war poster given to me by a friend that I have hanging in my office.
“Nicely, kindly I need u to teach me to do my own crap.”
Such was my son Jeremy’s response when I asked him recently in what ways we could best support him in moving towards being more independent and feeling ready for supported living. Just goes to show you that even when you are living with non-verbals you have to watch what you say. Not just in choosing your vocabulary, but also in what you complain about.
Jeremy has probably overhead me say more that a few times, “I’m so sick of this crap!” when looking at the piles of official paperwork that needs to be filled out, sent in, or filed. And the pile of stuff that just seems to accumulate everywhere if you don’t immediately recycle it or find another home for it.
So I’m not perfect (at least not when verbalizing at home). And Jeremy has been learning to do his own crap, just not enough of it. I guess we need to ante up his crap-load. Stay tuned!
This was first published in my “Ask Chantal” column of the Autism File.
I am currently reading your book Adolescents on the Autism Spectrum,… I have a son who is 27 and throughout his entire life he has been different… Recently I have come to believe he is autistic. My girl friend who has a 13 year old autistic son, says she has always wanted to tell me that she feels the same way in the belief that he is of the autism spectrum, possibly Aspergers. He has almost all the symptoms. I am now in the process of trying to get my son into some doctors in Melbourne, FL who are specialists… He has been a struggle to raise with all of his illnesses and challenges. He has been with disabilities since he was 4. We have been seeing the same psychiatrist for 22 years and were going to the same pediatrician for 17 years. …Why has no doctor been unable to suggest this diagnosis? Help me please. I am very interested in knowing if you have any other books out for adolescents and young adults with autism and/or Aspergers?
Jamie in Florida
It wasn’t until 1994 that Asperger Syndrome was added to the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) which is used for establishing diagnoses. It is only in recent years that Asperger’s Syndrome (AS) has become more understood and recognized by professionals and parents. That is why many adults with AS were actually misdiagnosed as children, often with bipolar, schizophrenia, OCD, and so on. You are right to look for a specialist experienced with Aspergers to ascertain if your son falls on the spectrum. Being properly diagnosed is useful for knowing why someone is the way he is and what strategies can be helpful in the areas in which he may have challenges.
My latest book, Autism Life Skills, based on interviews with adults on the spectrum may be helpful to you and your son to find out what many people on the spectrum say has been helpful to them. As well, you and your son may find GRASP a useful resource for more information.
Some people have written to me to say that Jeremy’s graduation speech is difficult for them to understand on the U-Tube video, so here is a transcript:
I have spent seven years at Torrey Pines High School.
Three years ago, I walked the graduation ceremony. Today I walk the same path, in the same cap and gown, but I have now earned my academic diploma.
My education at Torrey Pines has been my greatest achievement. I was once diagnosed autistic and severely retarded. When I arrived at Torrey Pines, I could not communicate and I spent my days in a class for the severely handicapped. Now I am going to college. I am writing a book about my life. I have become an inspiration nationally to many parents and educators of children with autism.
My story is like Helen Keller’s, the deaf, mute, and blind girl. Helen Keller had a teacher, Anne Sullivan, who taught her and took her out of isolation. My first great teacher was my mom, then the high school teachers.
My favorite story about Torrey Pines is when my teacher, Allan Gustafson, realized for the very first time that I understood everything. He was really trying to learn how to communicate with me. He said “Jeremy, I know you are in there somewhere. I can’t know what you are capable of unless you tell me.” I looked at him and saw tears in his eyes. I really wanted to make him happy. My nice teacher continued to try and reach me. He said, “Give me a sign.” I looked at him and spelled with him for the first time. Great teacher Allan was so happy.
The teachers here gave me good advice on more than just the subjects they taught. They understood that I might be different on the outside, but that on the inside I was just like any other student. Other important people include the ladies in the administration building who always said “hi” to me, and told me they were happy to see me. My speech teacher, Dr. Palmer, was nice, even if she tried to convince me to become a Republican. An exciting memory from this campus is when an MTV camera crew followed me around campus for the show, True Life: “I Have Autism”.
I would like to thank Bruce Cochrane, Director of Pupil Services, for the chance he took and the faith he had in me. I would like to thank the administrators, the school staff, the educators, (including Maureen and Janine), for allowing my voice to be heard. Without you, my life would still be imprisoned in darkness.
Nicely I wish I had made more friends from my years here. Being autistic, that is the hardest part. It is important to include all students in general education classes so they can be with their peers.
When Helen Keller grew up, she graduated from college, became an author, and an advocate for people with disabilities. I hope to do the same.
My real message to you today is:
Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.
Parents, believe in your children and encourage them to fulfill their dreams.
Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.