Author, Speaker, Autism Expert

Praise for A Full Life with Autism

By Chantal Sicile-Kira |  May 20th, 2012 |  Print Print  | 

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

By Chantal Sicile-Kira |  May 13th, 2012 |  Print Print  | 

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

By Chantal Sicile-Kira |  May 9th, 2012 |  Print Print  | 

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

By Chantal Sicile-Kira |  May 5th, 2012 |  Print Print  | 

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

By Chantal Sicile-Kira |  April 17th, 2012 |  Print Print  | 

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

Everyday Autism Crap

By Chantal Sicile-Kira |  February 12th, 2012 |  Print Print  | 

“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

By Chantal Sicile-Kira |  May 26th, 2011 |  Print Print  | 

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

 

1001 Tips for Parents of Autistic Boys and Autistic Girls.

By Chantal Sicile-Kira |  November 24th, 2010 |  Print Print  | 

Those who have heard me speak at conferences or who read my books know that I love information that is usable. When it comes to books on autism, practical rules. Two books have just been published that are full of useful tidbits that parents will appreciate, and these are 1001 Tips for Parents of Autistic Girls by Tony Lyons, and 1001 Tips for Parents of Autistic Boys by Ken Siri.

Like any book on autism, some of the tips in these books will apply to your child and your situation, and others may not. But with 1001 tips there are many to choose from. The book for parents of autistic girls is a great resource, as lately there have been a few books published on Aspie girls but nothing really for those on the other parts of the spectrum. When it comes to puberty and the teen years, parents of girls need information about how to handle the changes puberty brings (I think you get the picture).

On Thanksgiving Eve, I am grateful for the autism community of parents, professionals and support staff who have shared their wisdom as we search for enlightenment. In honor of the release of these two 1001 Tips  for Parents, I’m sharing my favorite tips for making it through the holiday season from my recent Psychology Today blog. Parents, you may find these useful in making it through the upcoming month and a half. I know how difficult it can be.

(If these tips don’t work, remember the three V’s – valium, vodka, vacation, but not if you are driving and certainly not for your child. – Disclaimer: The information appearing between these parenthesis was written to incite laughter, and is not to be taken as medical advice, please check with your doctor before self-medicating).

Why the holidays are so difficult for families with autism and what can help

Often parents in the autism community will joke that we become more religious during the holiday season that begins with Thanksgiving: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won’t hit the relative who tries to kiss them, and above all – we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ children.

Here are some areas of difficulties for children on the spectrum and their families during the holiday season, from my book, 41 Things to Know About Autism, published earlier this year :

The stores are full of noise, lights, lots of people, and winter holiday music that can create major overwhelm for those with sensory processing challenges.
• Social requirements such as relatives wanting a hug or a kiss that can fell painful.
• Holiday dinners where they are expected to try foods or sit for long periods of time with so many people and so much commotion.
• Many children are mesmerized by the colors and textures of the ribbon and wrapping paper and do not open the present but stim (get engrossed and play) with the wrapping
• The child does not understand personal space or have safety notions and so may run around the house or try to play with something breakable.
• Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
• Parents have a difficult time because they know there are certain expectations of behavior that relatives and friends have and that the child cannot fulfill.

What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting:

• Explain the difficulties your child has with the holiday dinner environment, decorations, noise etc.
• Let them know he is not just misbehaving, and that he is learning little by little to handle these situations
• Explain about dietary challenges so they don’t expect him to eat what everyone else is eating.
• Ask if there is a quiet room (child -proof in terms of décor) where your child can retreat for some quiet time to escape the commotion and noise.
• Send them a short but sweet letter or email ahead of time explaining why your child acts the way he does and the difficulties of the holidays form his point of view. They will have a better understanding of why she won’t wear a dress or he won’t wear a necktie, and why as more and more people start arriving, he tries to escape the room.

To prepare your child:

• Make a social stories book about what will be happening and the behavioral expectations. If possible include photos of who he will be seeing, the house  decorated during last year’s holiday season. If he is going to church, do the same for that environment.
• Play some of the music he may be hearing at this holiday season.
• Practice unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them.
• Practice a handshake if he can tolerate that.
• Write rules together – ie how long he thinks he can tolerate sitting at table, and the expected behavior.

On the day of the holiday celebration:

• Remind your child of the agreed upon rules
• Pack some little toys he can play with in his lap at the dinner table
• Bring some foods he can eat, especially if he is on a specific diet.
• Arrive early so that the noise level builds up slowly for him.
• Do not let the expectations of others ruin your day. Do what you need to do to make it as comfortable as possible for you and your child.

Holidays can be difficult because of all the expectations, as well as the sensory challenges, but with planning and information sharing the holidays can be more enjoyable for all.

Self-Advocacy is a Needed Life Skill for Students on the Autism Spectrum Headed to College

By Chantal Sicile-Kira |  October 17th, 2010 |  Print Print  | 

Psychology Today blog, October 17, 2010 – Yesterday, as I was presenting on Autism Life Skills in Grand Junction, Colorado, I discussed the need for teaching self- advocacy to high school students with autism, including Asperger’s Syndrome..  At the end, a parent approached me and said she was shocked to learn that once their child on the spectrum graduates from high school, reaches the ripe old age of 18 and is planning to attend college, a parent is no longer the person responsible education-wise: the student is. This means that when they are  18 years of age and are college students, the college contacts the student, not the parent. If the student will be requiring any kind of accommodations, he or she – not the parent – will need to ask for them  and discuss the need with Disabled Student Services.

This is why it is important that before they graduate form high school, students  know how to advocate for their needs. This includes having a good idea of what their disability is and how to describe it, what kind of learning style they have, their strengths as well as their weaknesses, and know what accommodations they will need. These students should know their rights, be able to discuss the accommodations, and know how to carry on a conversation and convince the college of their need. Some Disabled Student Services are knowledgeable and helpful to  students on the autism spectrum, others are still more comfortable with students that have a physically challenging condition, and have a difficult time with those who have an ‘invisible disability’.

All students on the spectrum need to learn self-advocacy skills,  but those heading to college need to learn them before they  graduate. If you are a parent or an educator of a high school student,  have self-advocacy goals addressed in the  IEP (Individualized Educational Program) or ITP  (Individualized Educational Program).  High school is the best place for him or her to start learning these skills, if he or she  has not already done so. For some information on transitioning from high school to college, check out  Catching the Wave from Grossmont College, a community college in the San Diego area. Some of the resources and facts may apply only to California, but there is a lot of good information for high school educators and parents to consider.

Jeremy Sicile-Kira

Jeremy Sicile-Kira

An Interesting Read: Create Your Own Economy by Tyler Cowen

By Chantal Sicile-Kira |  October 16th, 2010 |  Print Print  | 

About a year ago, this book arrived on my doorstep and although I was intrigued by the title, I wondered why I was being sent a book about economy by my publisher.  I was busy writing 41 Things to Know About Autism so I put it aside. Today, heading out the door to catch a plane for a speaking engagement in Grand Junction, Colorado, I grabbed it to read on the plane. I thought it would be nice to read something different from my usual repast of autism books.

Create Your Own Economy: The Path to Prosperity in a Disordered World, is a misleading title because this book doesn’t seem to have much to do with economy but does talk a lot about how as individuals we organize information these days and how this relates to autism in the writer’s mind. Tyler Crowen, a behavioral economist, writes about how people with autism organize and manipulate information, how our consumption of information is changing, and how the way we organize these information bites are reminiscent of autistic thinking. A very interesting read, Tyler has many positive things to say about autism and how it should  be discussed not as a disability, but rather as an ability and an asset to society. Although I agree in principle, I only have to think about how much help my son needs at 21 due to his autism and how much it is costing the state and the family for him to live due to his need for 24 hour supports. That’s the reality of his economy – and mine – at the moment.

That being said, I agree with much of what Crowen has to say, and it would be nice if society had more his viewpoint when looking at some of the ‘quirkiness’ or ‘obsessions’ of those on the spectrum. Crowen became interested in autism when a reader of his blog wrote  telling him he sounded like he had a lot of Aspie or autistic traits. So Crowen began to read about autism. He states at the beginning of the book,  “As I read more, I began to see that the autistic mind-set about engaging with information is a powerful way to understand the whole world around us. Especially now.”

Read it for a fresh look at autism, and how the way we use and analyze information now is more like our loved ones on the spectrum.