Preparing to Move: A Full life with Autism

February 20, 2014

Jeremy and Handsome

Jeremy, who is 25, is moving out into his own place within the year. For those that don’t know Jeremy, he communicates by typing and has many sensori-motor challenges.  I first started writing about him in  Autism Spectrum Disorder (Revised)  (Penguin 20014). We are all looking forward to this move. Transitioning to being an independent adult starts early in life and Jeremy has been working on learning different functional living skills since he was little.  In the book  A Full Life with Autism (Macmillan 2012), Jeremy described how having his own life and independence was important to him.

Over the next months we’ll be describing what Jeremy is doing to prepare for his move. Besides improving upon or learning new living skills, there is all that needs to be done for his self-employment initiative as an artist and advocate (visit his website, Jeremy’s Vision), and his volunteer work.  Jeremy is also trying to improve upon his social life, and we’ll report upon that as well.

When Jeremy was little, my husband and I were told to put him in an institution, and to get on with our lives.  That was never an option for us. Instead I worked hard at helping him reach his potential so he could live a life of his choosing.  We hope that our experiences shared here will encourage parents and educators to realize that even those who appear to be very impacted can learn to do more, no matter their age. The window of opportunity for learning never closes. Never give up! Perhaps you will have your own stories to share; we look forward to reading your comments.

Praise for A Full Life with Autism

May 20, 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.

More Rave Reviews: A Full Life with Autism

May 13, 2012

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

May 9, 2012

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

Review of A Full Life with Autism by Dr. Joshua Feder

May 5, 2012

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

Kirkus Book Review: A Full Life with Autism

April 17, 2012

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

Autism in the House? Keep Calm and Carry On

February 20, 2012

“ 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.

Everyday Autism Crap

February 12, 2012

“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!

 

Asperger’s Syndrome and why some adults may not have been diagnosed

May 26, 2011

This was first published in my “Ask Chantal” column of the Autism File.

Dear Chantal,

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

Dear Jamie,

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.

Chantal

 

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