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.
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.
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
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
The Golden Hat
Why did Kate Winslet ask over 100 celebrity friends including Oprah, George Clooney, Rosie O’Donnell, Tom Hanks, Kobe Bryant and Leonardo DiCaprio, be photographed wearing a Golden Hat for a book that includes photos of eleven non-verbal youngsters with autism wearing the same hat?
What are the long term goals of the Golden Hat Foundation? What goals do you have for your youth’s future? What are your child’s long term goals?
Join the conversation on May 14 about creating A Full Life with Autism when Margret Dagmar Ericsdottir, President & CEO of the Golden Hat Foundation joins Moderator Chantal Sicile-Kira to discuss these topics. The one hour Q & A on Monday May 14, 2012 will take place from 6:00 pm – 7:00 pm PST (9:00 pm to 10:00 pm EST). Sign up for the Autism College newsletter to receive instructions on how to participate and send in your questions. Instructions will be sent via newsletter before the Q & A takes place. (Already registered? Hold tight, the participation link will arrive soon).
The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.
Kate Winslet and Margret D. Ericsdottir
Guest: Margret D. Ericsdottir is the President & CEO of the The Golden Hat Foundation; Founder Frontier Filmworks; Co-Author, The Golden Hat: Talking Back to Autism; Advocate for Individuals with Autism; Mother of Keli, 14-year-old with nonverbal autism. Margret Dagmar Ericsdottir, MBA, had a successful career in business and held various executive positions in Icelandic companies. Then, in 1997 Margret’s youngest son Keli was born and diagnosed as having severe autism at the age of four. The sudden and profound changes in her family prompted Margret to shift her focus from career-related pursuits to caring for Keli. In 2006 Margret founded Frontier Filmworks, and made the documentary, A Mother’s Courage: Talking Back to Autism, which describes her family’s journey.
The award-winning actress, Kate Winslet, narrated the documentary, and subsequently co-authored The Golden Hat: Talking Back to Autism, in which celebrities and some non-verbal individuals with autism are photographed wearing a “golden” hat.
Moderator: Chantal Sicile-Kira is the founder of Autism College, author of five books on autism. Her latest book A Full Life with Autism, was co-authored with her son, Jeremy Sicile-Kira whose photograph appears in The Golden Hat.